His opinion is that you can over dose on B12 and this can cause symptoms and harm. I gave him symptoms of before and now. Stated i only started improving when put back onto every other day Injections. He did agree to let me continue with b12 injections and reduce frequency when I felt ready . He said he thought it was psychologically helping me.
He has advised amytriptyline and counselling for unconscious anxiety. Also he thought the bad fall I had triggered migraines and vertigo. The B12 just come across by chance. The sizzling and light sensitivity due to migraines. So at least the B12 can continue and I've asked him to put that in writing for G.p. As for the rest ?? There is such a build up to these appointments after a 18 week wait. Shattered now from trip and trying to make sense of what he has said. He wasn't arrogant just seemed totally dismissive that B12 defiency can cause such horrible symptoms.
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Sorry to hear this rubbish being spouted yet again. But pleased he has agreed to continued B12. It is about time Nice and BNF and the others made doctors read updates and information. I appreciate that for the medical profession there is a lot to absorb in their chosen profession, chosen being the operative word. So many people suffering unnecessarily and getting worse. As beginner1 says they do have their favorite words to dismiss the truth. At least on here you can get sensible advice and support. Take care xx
Ask your neurologist to quote you chapter and verse on his statement that you can cause harm by overdosing with Vitamin B12 . We need to know how the harm manifests itself ,and it’s exact symptoms .We need to know the research involved with it and we need to know the sources. It needs to be puplished on this site ASAP, in order to save many of our members ( including myself) from harm . . He /she would be doing us a huge service if we knew all this and we would be eternally grateful . I, would for one award him /her a 🥇.
I wasn't in the position today to ask for all the details and research to back up his statement. I was upset inside at his ignorance . I did say i thought water soluble and not possible to overdose. I did say I've listened to real people on this forum with very similar symptoms I could identify with. I listened as he stated his view. I didn't believe it though. It was a very difficult consultation. I was scared by the brain mri results implications. I'd waited 18 weeks for.He disagreed with the last neurologist! What I did learn was b12 defiency can cause silent migraines from the nerve damage from b12 defiency that can be permanent. Falls can cause /trigger symptoms like virtigo to then reveal b12 defiency. Silent migrains do describe most of my current symptoms whilst still receiving alternate day b12 injections. Light sensitivity noise sensitivity, nausea. Sizzling 'white noise in your head ect. Also what damage is shown up on mri scans. Despite his view he's said he would write to G.p to say I can next try weekly then a longer period at my own pace. I believe there is more healing to do. I had to stomach his view that the B12 injections were only psychologicaly helping now. I did say yes they are because the b12 is making me better. When I stopped my symptoms returned. He did listen as i stayed calm and listened to him. If he was definitely knew about harm from b12 i don't think he would have 'sanctioned ' my current regime?? I hope I left him with a? I hope he is wrong I hope b13 can give more healing. My g.p who initially refused more injections and told me to take tablets has had his eyes opened. He has witnessed the change in me. He saw me today walking in a straight line. Calm not visibly shaking and not anxiety ridden. He said he was pleased the regime working. So I hope that helps the next person. It shouldn't be a battle but everyone of us that can change a view of a doctor or to get them to research b12 will help some one else.
Oh Nackapan , my posting was very much tongue in cheek ! . It is TOTAL RUBBISH what he said ! One cannot overdose on B12. He will not be able to produce any evidence that one can , or that it can cause harm . We must not allow these people to intimidate us . It is difficult not to though , when one is feeling so very rotten .You have had a bad time . I do hope that you will persevere with the B12 injections . I’m so pleased that you are feeling some benefit . Very best wishes to you !👍
Oh those famous words!! “You have anxiety and you need medication.” Ugh!! I wish they’d just shove that damn prescription pad already! So annoying!!😖 No money in vitamins but man those antidepressants and sedatives are adding up let me tell you! I get so angry just thinking about it🤬
YES!! It’s so refreshing to not have to explain this for once. Very few want to listen....always something to say. Even my own family that saw what I went through. Some of them I know have the deficiency as well but I’d get further talking to a brick wall! (Sigh).
I need to take some melatonin as it’s almost 5 a.m. and I’m still up😳
i have changed GP practice so often and the same old, same old. Just gone through 10 weeks on 'low self-esteem' - waste of time. Can't they see it's because I am ignored. I too sleep really poorly, 2 nights ago went to sleep at 5.40. Tonight, went off at 2.10 and woke at 4.10, sat in bed cross stitching until 7 am and then went to sleep until 9.45. So, I ask, where do you get melatonin, 'cos GP won't give it me and I refuse to take either antidepressants or addictive sleeping pills. 5HTP does not seem to work either.
i buy melatonin online from Amazon by pure encapsulations. I also went to a holistic doctor yet an md and he did prescribe me low dose naltrexone which also helps me sleep and it is a very safe drug in low doses. You can read up on it. Regular md's don't know how much it helps people with pain and anxiety and it is such a low dose that it is almost homeopathic. It helps a lot of different diseases but it really helps me to relax and sleep. I also was able to get medical cannibus and I take that right before bed which helps me with pain and sleep also. You might want to try some of those things. I take all 3. I don't know if you can get medical grade cannibus in the UK but you can here in the United States. If not, you can get reputable cannibus online, it is just not medical grade but it might help with sleep. Good luck to you Pammy. I am getting my 5th loading injection today, hoping I start to get better.
I try not to take melatonin often as I find I eventually get used to it. I also find it works better if I haven’t taken it for a while. Epsom salt baths work wonders for me for so many different issues. Heart rate, anxiety, muscles and sleep.
Out of curiosity, are you not able to buy melatonin over the counter?
Hi, what dosage of the amitriptylene did he prescribe? I ask because I was prescribed 10mg a day for "nerve" pain before I had an MRI scan. I reacted badly to the amitriptylene so stopped. The MRI showed up a C5C6 problem causing pressure and damage to my spinal cord. I never mentioned that I si with B12 once a week to the neurologist after the MRI, though my GP knows. Still waiting for an appointment with the surgeon to rectify the neck. I was told if I noticed paralysis to go to A&E.
I was prescribed 14mg before bed and then to increase it. I've been prescribed this before but haven't actually taken any as I wanted to monitor the B12 injections. I did at one point take alot of pain relief though. Sounds awful what you going through. The wait must be hard. Hope your appointment comes soon.
Hi, strange that he prescribed such a low dose, as from what I have read amitriptylene for anxiety is usually around 150mg a day while when used for nerve pain 10mg is sufficient. The 10mg gave me a good night's sleep but in the morning the pain and virtual paralysis of my chest was intolerable. After two weeks I had to stop. I also have been suffering from migraines and flashing light silent migraines, these did begin before I found out I was B12 deficient, so are not because I SI. Many of my symptoms have now gone that I can blame on a lack of B12, and I think that it has helped with damage to my spinal cord. I hope you get sorted out soon
Thanks. And you. I think the low dose was was because I'm so reluctant to try it and it was a starting point. Now I think as a migrain preventative? ??
When I saw the neurologist he started telling me I'm damaging myself & risking b12 toxicity (because I was truthful & told him I was SI weekly) ... that's about the point I lost all faith in him helping me!!!
Had exactly the same thing only my symptoms are caused by anxiety and depression and I don't suffer from B12 apparently that's a thing doctors tell you when they don't know what wrong the fact that things improve after an injection is a placebo effect so like you I felt what a waste of time!!!
Sorry but I almost spat my tea out when I read unconscious anxiety 😂.
I am not a neurologist but that to me sounds like a complete bunch of nonsense. If you follow that thinking all the way to its conclusion where could that end up..Makes me mad.
The B12 is helping because you need it. The body expels what it doesn't need.
It reminds me of a saying I heard."Pick your consultant, pick your disease". They all see that in which they are trained.
Hope you have some tea left!! Yes so glad I'd been on this forum. Never have been on a forum before and never used facebook as in my work it used by so many to bully or give a false sense of reality to teenagers. So glad I had the information gained on here so I could filter the neurologists opinion. As you say ' proof of the pudding' I've improved only when I went back on every other day until no further improvement. I'm very grateful to those that told me to push for it. Never easy when so ill
I am going to try and get them to weekly and hopefully a little longer between. My arms are sore....Worth it though. Some of the consultation though when we got off the B12 and I got what I wanted /needed to be put on a letter so they not stopped. I just had to swallow the comment I'm psychologicaly dependent on them!!!!!!! My husband was very impressed by by non reaction as I'm too responsive at times and maybe ask too many questions. ?? So with the new information I'm trying to move forward . Just got an invite to a wedding but no idea if I can drive that far or indeed cope in the lights and noise. (My husbsnd cant drive) All very difficult when you take each day at a time. I'm sure everyone feels the same about not bring able to make plans and this condition certainly sorts the wheat from the chaff as far as friends go.
Do you have to go to surgery every other day to get injections? How do you manage this? I am virtually bed bound and only on 8 weeks injections because off neuropathy symptoms, did not get proper starting doses of every other day till no improvement and now agoraphobic because of anxiety which I think like you is caused by lack B12. Have never seen neurologist my GP never send me to any specialists. I get my injections at home but wondered how this would work as I think I need them every other day per guidelines to start over like you did. But cant get to surgery!! I have been following your story with interest. Thanks
I had the initial loading g doses . Literally out of bed into a cab. Looking back I don't know how i did it . My husband came with to literally hold me up at times. The cab drivers were fantastic but it did get so expemsove. They were then stopped. I took tablets sub linguals ayr liver ect I got time 6 weeks but symptoms started coming back. Managed to get every other dathan started as advised on here. Too long a story. I started to really improve up and down but went from being in bed 22/24hrs to out of bed until at least 1600hr I've been on this regime 7 weeks. Also the anxiety which is caused by defiency got loads better. I still get waves but nothing like I did. I still use breathing exercises and rescue remedy and aromatherapy oils are always burning. I drive to get my injections now. 1 mile. My husband couldn't work from home all the time but I was fortunate to be left snacks and food whilst he was out. Ask for a referral. I used to have telephone consultations. There was no eay I could sit in the eating room. The nurses see me on time . Now I can be in the waiting room. Still feel it's an our of body experience and still never really know if my legs will hold me up. They have and I walk in a straight line now. Cawthorne exercises really helped me. I did eye exercises and leg exercises in bed. I also made myself crawl around till use muscles. The every other day restarted was the best thing I did. I'm still far from put of the woods . Living a very isolated life until my husband home or I get a visitor. Today I felt unwell weak buzzy head heavy and just wanted to go back to bed. I managed to walk round the garden. Do some pysio. Has to make myself eat today. If I don't I'm really ill . I think b12 speeds up your metabolism. I hope you get what you need and get some improvements. Get a telephone consult. Get a friend to help you or partner if you have one. How long have you been ill? Do get some help . Take care
Thanks for such amazing reply. I live alone no close family or friends so no one to help which is why I have so much trouble getting help for anything especially with being agoraphobic. I have been very ill for years but diagnosed 2015 with PA neurological but did not get guideline treatment only every 3 months only started 8 weeks injections after reading advice on here also and told nurse who comes to house about guidelines but cant seem to get doctor to listen about how guidelines were not followed initially and that I need more, but I think they would not send nurse every other day as they complain now! I have been reading your posts and have very similar issues and I think you are very courageous and brave fighting for your rights I wish I could do the same. I hope you feel better soon I will keep checking your posts as I value your help and support for others in this situation. (Sorry did you have telephone consultation with neurologist or doctor?)
I had ampoules delivered from Germany; alcohol wipes / insulin syringes with needles already attached & sharps box from medical supplier online; thing that breaks the top off the ampules from amazon (thumbs are not great to snap myself).
It works out about £1 a jab.
I am working and it’s not a particularly stressful job but I’ve gone from being:
1. Stressed about work & not sleeping as a result to just being disturbed by husband snoring!
2. Anxious about illogical things to not bothered very much at all
3. Claustrophobic in trains & at times cars to not
4. Slight shakes to minimal unless need a top up
5. Brain fog to clarity of thinking
6. Occ. difficulty with words to only when I need a top up
7. Lethargic and needing to sleep most of the weekend to engaging & up with the rest of the family
...it goes on!
Years of feeling rubbish & others saying it was likely depression, seek counselling, take amitriptyline for nerve pain I had (post op) etc etc...
Bloods 2 years ago showed insufficient B12 not treated, despite my protests, bloods 6 months I got done (as got on these forums) barely into range (I had taken oral B12) ...GP redid with same results...still refused treatment despite clear PDF stating required.
Started self injecting every other day for 2-3 weeks, now need about every 2/52 any longer and some symptoms return. Apart from initial blood test it’s cost <£20 so far to treat since end Sept / Oct and it worth so much more mentally & physically!
Hi please can you let me know what you are injecting, is it hydroxy or methyl? Also which site are you getting it from as when I looked online I could only find ones that were not shipping to England. I would really appreciate any help thanks
Sorry for the delay. It was from versandapo, B12 ampullen, I didn’t know there were different ones when I ordered so it’s cyanocobalamin. It’s working for me.
Thank you, sorry for later reply I was very ill after posting yesterday. I dont think I could manage to self inject on own my arm doesnt work properly, nerve damage at moment, and have no one to help. But thank you again I hope you feel better and keep recovering with injections. Thanks again for helpful information. Take care x
Sorry only just seem this.....missed it some how. The telephone consultations were with g.p. usually because I either couldn't get there or couldn't get an appointment. They usually do ring backs after surgery hours. Thank you so much for such a nice reply. I really hope you get some improvements. Take no notice of moaning nurses. It's their chosen job to take care for you.
Nackapan - well done, first of all. You have kept the B12, and raised a good question: what would possibly make a professional consultant state the "dangers of B12 overdosing", and then not immediately advise your GP to stop the treatment?
I once asked a haematologist to give me the supporting research evidence for her statements that "B12 is highly addicitive" and that "B12 is toxic" - I told her that it was important that the 8,000 Pernicious Anaemia Society members were immediately informed of this new evidence because there were many people on the forum who were self-injecting and might be in danger...... strangely, she did not seem that bothered and although I asked for a copy of this research 3 times, it was unforthcoming. Before I started self-injecting every other day, I have searched for any such paper, but have only ever found evidence to the contrary. Google"B12" and "toxin" ( my nurse did, as a precautionary measure, when asked by the GP to give me 2 injections a week) and you will only find that B12 is used as an effective anti-toxin. In very high doses.
From which, one can only conclude that both the above statements are complete and utter nonsense. Supported by the fact that the haematologist did not tell my GP to stop injections immediately, but to reduce them from the (then) monthly to the 8-weekly regime that I am still on to this day. Alongside the self-administered every other day injections that my GP and the nurses have all been made aware of. They are also well aware of how ill I was, and how much I have improved without any other treatment besides multivitamins and minerals from H&B.
I have refused at least 4 offers of Amytriptyline along the way- so no-one can credit the changes to that !
Again, hats off to you. When I was really ill, I spent most of my precious long-awaited consultant appointments crying !
Yes must admit been pretty poorly and weepy today. I've not had anything else apart from pain killers. I didn't want symptoms to become confused. I am thinking of trying something in the future if theses migrains don't lesson silent or otherwise. Thank you a nice post
Hi - I was diagnosed a few months ago with PA and had my loading doses + one extra one. Although I have had many symptoms the doctor did not want to refer me to a neurologist or continue injections as when asked if I could do my buttons up and put my socks on I told her I could do this! My levels were 140. I have received methylcobalamin today from Oxford Biosciences, do you know anyone who has used this as obviously buying over the internet is pretty daunting. I would really appreciate a reply as the whole thing is making me feel lost and a bit low to be honest
The neurologist said yesterday my symptoms of zizzling head light sensitivity noise sensitivity that then brings back stagger walk fits. I'm only sensitive to artificial light. Also colour TV. I do manage to watch a little in black and white now. There are so many sorts of mI grains. He just said the damage to my nerves from the defiency and the fall have triggered them and the vertigo at the start. It was news to me too.
I'm sorry you had this experience. My neurologist was utterly dismissive that B12 deficiency caused by symptoms and also my recently diagnosed brain inflammation - he thinks I have MS. It was fascinated how he made sense of what I told him, and he edited out anything that didn't fit his interpretation (the fact that my symptoms improve when I have injections and get worse when I don't - and this has happened more times than I can count now... in his head this has happened once and it was a 'coincidence'). My GP has also spoken about the placebo effect of injections (something I understand well as I'm a psychologist). I found Martyn Hooper's book What you need to know about PA very reassuring - everything I've experienced from Drs he mentions in the book as common experiences.
Okay thank you that is reassuring. I've bought his latest book but my head and vision prevents me from having a good read yet!! That neurologist has really messed with my head. Sorry about the pun
Hi, as said above, do consider si. It is liberating, no longer are you at their mercy/scorn/disbelief. I sc into my stomach which is much less painful than the nurse’s im into my arms. I use diabetic needles.
I tried to reorder some hydroxyl from my normal online retailer- but found the previous order couldn’t be sent to the Uk, several were like that. I did find someone though - albeit had to order 10x10 1ml. I wanted to get an order in before Brexiit and was happy at price - just over £50.
Are you ensuring your folate and ferritin are optimum too, and taking a good B complex?
Just to let everyone know, it’s the same here in the United States! Dr’s are dismissive and want to give you depression meds. I see a hematologist on Friday and I hope it doesn’t go like yours. I have waited 3 years for a diagnosis and I have yet to get treatment. I did get an endoscopy yesterday showing gastritis and am on meds for the next 7 days. I am awaiting the biopsy results. I can’t get the medication here in the US without an RX. How and where do you get the medication to self inject (in case I am told I can only get monthly) and how do you know you are getting it from somewhere reputable? Hang in there everyone. At least we have one another. I am greatful for all the information on this site.
It should not! I feel so awful. It’s ruining my job (I own my own business) my everyday life. Thank God my husband is amazing because it’s ruining our love life too! Probably too much TMI, but there has to be someone out there that can advocate for us. In the UK it seems there is, but not here in the US. If there is, please let me know.
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